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Sunday, September 19, 2010

We had an uneventful but very fulfilling weekend here at the Hughes home. On Saturday, we took Ben to Home Depot to look at some things and then had a visit from our friend Kaysie. She came by to bring Ben a late hospital gift- a Thomas backpack filled with Thomas stuff. What could be more exciting for Ben?! Nothing!! Thank you Kaysie!

Ryan and I proceeded to spend the afternoon and evening watching all three Back to the Future movies while Ben played with trains and watched Thomas on my computer. The weather has turned ugly so it was nice to spend the day inside.

Sunday morning I brought out Ben’s crayons so he could color. He seemed to have more fun dumping the crayons out and putting them back in though.

Whatever makes him happy :)

We decided to get out later and take Ben to the mall so he could run around. We went by a toy store and Ben immediately found the train.

He kept waving to it as it went by him

Tomorrow, we will find out the preliminary results on Ben’s culture. When he’s grown pseudomonas, it usually shows up by Monday. I will put in a call first thing tomorrow morning. Please, please, keep your fingers crossed!! If Ben does culture pseudo again we will be switching him to Pulmozyme in the morning with Hypertonic Saline at night. We will also pick our TOBI up again too. There really is nothing more we can do if he is still growing it out. We’ll be on TOBI and Pulmozyme permanently until we get three free cultures.

If the culture is clear we will just continue with the HTS 2x a day and will not start TOBI again. We will go back in a month and reculture. If he cultures it then, we’ll proceed with the meds stated above.

I’ll update as soon as I know. I hope everyone else had a good weekend!!

Our Greatest Joy

Our first and only child, Ben is 100% pure boy. He loves anything train, truck or car. You can usually find him pushing Thomas on his tracks or running a matchbox car up the sofa. He goes by the name of Ben, Benjamin, Manny, B, Little Man and many more. Ben may have CF but it will never define who he is. It's only a small part of him. He will grow up knowing he can be anything he wants. He is a little boy who is loved by all who meet him.

Our Family

The Author

I am a wife to Ryan and Mom to Benjamin and couldn't be happier. Benjamin was born March 11, 2009. Ben was prenatally diagnosed with Cystic Fibrosis after blood test revealed Ryan and I were carriers. With absolutely no family history of the disease it was a huge shock to us and our friends and family. Despite having surgery at less then 48-hours-old to repair his small intestines, we have been lucky with his health. I created this blog to help keep friends and family up-to-date on what we are doing. My hope is that Ben will look back on it one day and see how much we love him.
Welcome to our life!! It's pretty amazing :)
For more info on Cystic Fibrosis please visit: www.cff.org

What is Cystic Fibrosis?

Cystic Fibrosis is a life threatening, inherited disease, that causes mucus to build up and clog some of the organs in the body. Majorly in the lungs and pancreas. When the mucus clogs the lungs it makes breathing very difficult. The thick mucus also causes bacteria/germs to get trapped in the airways, which causes inflammations and infections that damage the lungs.
The mucus can also block the digestive tract and pancreas. It stops the enzymes from getting into the intestines. The body needs enzymes to break down food, which provides important nutrients to help us grow and stay healthy. People with cystic fibrosis often need to replace these enzymes with capsules they take with their meals and snacks to help digest the food and get the proper nutrition.

How do people get CF?

Cystic Fibrosis is a genetic disease. Which means people inherit it from their parents through genes (or DNA), which also determine a lot of other characteristics including height, hair color and eye color. Genes, found in the nucleus of all the body’s cells, control cell function by serving as the blueprint for the production of proteins.
The defective gene that is responsible for causing cystic fibrosis is on chromosome 7. To have cystic fibrosis, a person must inherit two copies of the defective CF gene.one copy from each parent. If both parents are carriers of the CF gene (i.e., they each have one copy of the defective gene), their child will have a 25% chance of inheriting both defective copies and having cystic fibrosis, a 50% chance of inheriting one defective copy and being a carrier, and a 25% chance of not having CF or carrying the gene.

What is the life expectancy for people who have CF?

There is no way to accurately predict how long people with cystic fibrosis will live, as many different factors may affect a persons health. Severity of disease and time of diagnosis are two such factors. Many people have a mild case of CF, while others can have moderate or severe cases. In addition, some adults with cystic fibrosis have only recently begun to use new treatments, while an infant diagnosed at birth will have the advantages of starting specialized treatments that were not available even a decade ago. Improved treatment and management of Cystic Fibrosis now results in a much longer life expectancy. Since the 1960’s, average life expectancy has risen from 5 up to just over 37 years